ReviewHuman genetics2018
Australia: regulating genomic data sharing to promote public trust.
Review in Human genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A systematic review of consumers' knowledge, attitudes and experiences of primary health professionals' role in genomic medicine.European journal of human genetics : EJHG · 2025Pooled it
- Opportunities for a national genomic data governance framework in Australia: a systematic review.BMC medical ethics · 2025Pooled it
- Maternal perspectives on sharing newborn genomic data.European journal of human genetics : EJHG · 2026Article
- Pharmacogenomics in pediatric oncology: Australian adolescent or young adult and caregiver perspectives.Genetics in medicine open · 2025Article
- Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Secondary use of genomic data: patients' decisions at point of testing and perspectives to inform international data sharing.European journal of human genetics : EJHG · 2024Article
- Balancing the safeguarding of privacy and data sharing: perceptions of genomic professionals on patient genomic data ownership in Australia.European journal of human genetics : EJHG · 2024Article
- Does Legislation Impede Data Sharing in Australia Across Institutions and Jurisdictions? A Scoping Review.Journal of medical systems · 2023Article
- Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.BMC medical genomics · 2023Article
- The implementation of large-scale genomic screening or diagnostic programmes: A rapid evidence review.European journal of human genetics : EJHG · 2023Review
- Dynamic consent and personalised medicine.The Medical journal of Australia · 2022Article
- Views of university students in Jordan towards Biobanking.BMC medical ethics · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Responsible data sharing in a big data-driven translational research platform: lessons learned.BMC medical informatics and decision making · 2019Article
- Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.Human genetics · 2019Article
- Genomic Testing for Human Health and Disease Across the Life Cycle: Applications and Ethical, Legal, and Social Challenges.Frontiers in public health · 2019Review
Corrections and comments
- Erratum issued
Authors and funding
8 authors.
Funding
Abstract
The regulation of genomic data sharing in Australia is a confusing mix of common law, legislation, ethical guidelines, and codes of practice. Beyond privacy laws, which only apply to genomic data that meets the definition of personal information, the key regulatory lever is the National Health and Medical Research Council (NHMRC) National Statement for Ethical Conduct in Human Research ("National Statement") (2007). Compliance with the National Statement is a requirement for institutions to apply to the NHMRC for funding, and includes-among other things-requirements for review of most genomic research by Human Research Ethics Committees. The sections of the National Statement specifying requirements for research with human genomic data are currently under review, including proposed new requirements addressing the return of genetic research findings and oversight of transfer agreements. Ensuring the willingness of Australians to donate their genomic information and participate in medical research will require clarification and harmonisation of the applicable regulatory framework, along with reforms to ensure that these regulations reflect the conditions necessary to promote ongoing public trust in researchers and institutions.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.